my 6 year old just diagnosed looking for answers

[Glenn]

Hi, I'm very lost and scared. My son was just diagnosed with Tourettes. He is 6 and a half and has had eye blinking for over a year and throat clearing for two years. He has just begun a second vocal tic that is like a humming in his throat along with the throat clearing. At times, he may clear his throat 30-40 times in a minute but mostly it is around 5-10/ minute and all day long except for when he is running around and playing. As soon as he slows down it comes back strong. He may have another moter tic but is has been hard to tell for sure.

 

It seems to be worst in the evening when we are reading or sitting down for dinner. It also picks up just when he gets ready to go to school. I'm not sure how it is in school but his teacher has mentioned it to us and that it has increased lately. We have a meeting on Thursday with the teacher so we will learn more then. I have been in a tail spin reading all the information about Tourettes on the web ( this is the first diagnosis in our family - both sides) I scared to death what might be next and how it will impact his life. So far he is doing well in school ( just 1st grade) reading well and learning. It does not appear he has ADD or OCD yet or if he does, it is mild.

 

What can I expect ? Do most children get worse every year until the mid teen's? Is he just at the beginning of a very difficult and worsening road? Shoud we expect to see the tics move location or new ones be added to the few he has?

 

Also, I hear that some vitamins help like B-complex and magnesium taurate. Is that correct and what is the best dosage for a 6 year old that is 61 pounds.

 

Thanks so much!!

[Claire]

Welcome Glenn,

 

At the risk of being disruptive (and I am not a doctor), please be advised that your child may not have Tourette's, especially since no one else in your family does. The neurologists typically diagnose based on motor and vocal tics for more than 1 year. However, some of the poster's children hear had those symptoms and were reversed (e.g no more vocal tics, minor or no motor tics) by treating other health issues. e.g. excess mercury/metals, yeast, food sensitivities, vitamin deficiencies, sensitivity to computer and TV screens...)

 

I suggest you read this board a lot--for knowledge as well as inspiration and make an appointment with a doctor from the list at the top of the forum, who will run tests on your child.

 

http://www.latitudes.org/forums/index.php?...st=0entry3404

 

Our success rate for substantial improvement in children is phenomenal. The younger the better, in my opinion--easier to form healthy habits.

 

Even if it is Tourettes, you should still see major improvement. Some of the parents here have kids with TS--the treatment is similar.

 

Truly, taking this steps has an excellent chance of changing your child's life.

Claire

[Guest mommy2111]

Hi Glenn,

 

Your post touched me. I have a wonderful 7 year old son with Tourettes. He was diagnosed a couple of years ago. Neither his father or I have Tourettes, however, we both have mild OCD. I can just give you what our experience has been with his Tics. It seems they come on, become very frequent, and then slowly go away (waxing and waning). He has had quite a few different tics both vocal and motor(opening and closing his mouth, stretching out arms and fingers, making high pitched noises). They come and go though. Sometimes we won't see very noticeable ones for months on end. In our household we refer to our sons tics as "habits" and for some reason it seems to help me keep a positive atitude. We will just sort of say "So thats your new habit ". Even though at times watching him tic and twitch is unbearable, I just know it is a part of the wonderful person and child he is. I truly believe a child can sense a parents anxiety, so I try my best to just let my son do his thing and then come on wonderful forums like this to express my concern and fears. From what our neurologist has told us, their is no real way to know if his ts will get worse or go away completely. Both could happen. Hang in there ok? I look forward to future posts from you and your family to hear how things go.

[Heather]

Glenn,

 

As Claire has mentioned above, it sounds like your case may not be a true Tourettes as there is no Tourettes in your family background. My son's tics were very severe last winter and right now they are almost non-existent and have been for over a month due to various nutritional supplements.

 

If you read the posts on this forum you will learn of various treatment protocols used to either stop tics completely or reduce them to a manageable level. Avoiding food dyes, additives, preservatives can be a good start, as well as using a good multi-vitamin to help correct nutritional deficiencies.

 

I would suggest finding a good DAN doctor or naturopath if you are serious about using natural treatment to correct imbalances within the body. There are many success stories posted on this forum and although certain Vitamins seem to be common deficiencies (B6, Zinc, Fatty Acids, Vit C and E), every child develops different deficiencies based on their genetic makeup and environmental exposures so it is important to be tested and follow the advice of an expert in the field.

 

Heather

[Gina]

Glenn,

 

Welcome! When I read your post I couldn't help but remember how I felt when the bomb hit for me. (and that is exactly what it felt like) My heart goes out to you. My son was diagnosed 3 years ago and he was also in 1st grade and lucky for us no signs of ADD/ADHD or OCD either. It was probably 4 months that went by before I found this wonderful web site. Prior I searched so much and found so much negative and worst cases of TS on other websites that I was a complete basket case just from reading all the info. To the point of making myself physically and emotionally sick. I can sooo relate to your feelings of Scared and Lost. I have been there. But consider yourself "found" here with all this wonderful info.

 

My first suggestios to you is to read, read, read. There is a whole lot of info and compassion here. I truly believe that "Knowledge Is Power"

 

After I found latitudes I was still a bit worried about all the vitamine/supplements stuff. Mostly because I didn't understand a lot of it. So I chose to do the least advasive which was changing my sons diet. No preservatives, artificial color/flavor, high fructose corn syrup, etc. That alone made such a difference for my son. But I have to say its not easy at first and it takes a lot of time reading food labels and finding the right places to shop (Whole Foods is a great place if there is one in your area) and I know for me there was not a whole lot of support from others. Friends and Family thought I was a bit wierd for going this route. But now they see how it has helped and are amazed and even quite proud of us.

 

After I did all my reading here and found our what to try I eventually added vitamines and saw even more positive changes. If you do decide to introduce vitamines into your sons routine I recommend reading info from Bonnies Supplements. (bonniegr.com)

 

I hope you are feeling a little bit less stressed and a bit more hopeful. Sometimes knowing that your not alone helps a ton....

 

Best of luck to you and your son.

Gina

[Guest Guest_efgh]

Claire and Heather

 

Just a small clarification. All the documents mention that for a person to fulfill the TS criteria, one should have both motor and vocal tics for more than a year! There is NO mention about the genetic background. I too like both of you feel that Glenn's child may not have the typical Tourette symptoms etc in the long run but I am surprised that there is no scientific evidence which says that genetic link SHOULD be there for a tourette diagnosis. Atleast in my son's and Heather's son's case , our kids DID HAVE motor and vocal tics for around a year and both our kids are doing great NOW .. There is NO genetic background in our family... But still I feel that our kids may have those "ticcish tendencies" for ever even though they may have them at a manageable level..

Just pouring out my thoughts since I am a bit not clear in that regard.. ofcourse, with or without TS diagnosis our natural treatment protocol is going to be the same - but thinking!!!

Your wise feedback on this would be appreciated..

[Claire]

efgh,

 

You are absolutely right, a genetic connection is not required for a TS dx. It is just in the past they said it was 'rare' for TS to occur without a family history, and suddenly it seems that all these kids are getting it. This leads me to think other factors (e.g. mercury, whatever) are a factor--just as with autism. Plus the TS % is 1% or so, while other tic syndromes are 20% which leaves lots of room for errors in judgement.

 

Certainly, I would say that most of our kids have a predisposition toward tic syndromes (e.g. chronic tic syndrome or transient tics). However with a TS diagnosis, with the mainstream neurologists, there is more of a resigned "they will tic and you have no control unless you want to drug your child". This is what I think Heather and I rebel against. Not that children still have some tics but that thus people think that they can't help it.

 

I suspect that if you and Heather hadn't intervened, you would likely have crossed that year mark and IF you had bothered to go to a neurologist, your kids might have gotten that label. Because you are the type of parents you are, your children have a different path and will lead a much more comfortable life. Your posting here should document to others that this is a gift they can give their children: the gift of exploring alternative methods. The success rate here, though anectodal, has been so high for those parents who truly committed to the process, that it cries out for others to pursue this. As long as the parents manage the emotional aspects of unconditional acceptance of the child and don't ask them to try to stop ticcing (!!), wouldn't you bet that well over half will see some improvement? Certainly the board's success with seeing substantial improvement with kids is over 75% for those who are dilgent.

 

What I don't know is if, like autism, there is an age factor--with autism, the longer you wait the lower the success rate. To me, this is the biggest DANGER of a TS diagnosis. If early intervention is most likely to achieve the biggest results, precious YEARS can be lost trying to just focus energies on accommodations and acceptance vs looking for solutions. Finally, and even more challenging, there isn't one formula, but inherently some trial and error. e.g. even for food sensitivities, there are different foods that many of us worry about.

 

It is all about intervention. The biggest advantage I see for the 'label' is understanding from the school system. But certainly even telling them it is a tic syndrome you are working to heal would serve the same purpose.

 

Claire

[Andy]

Hi Glen. Your son's tics sound alot like my sons. My son started with a brushing of his face as if he was trying to push hair away and then it got only more and more severe until he progressed to what your son is now doing. Actually it got even worse but then we found a plan of treatment. Thank G-d. My son first started to show signs of ticing when he was three and it was after an illness that followed a vacination shot. There is no TS in either my wife's or my bloodlines, however, my son was diagnosed with TS. This does not make the issue any better or any worse but may lead to the path that is needed for correcting the matter as much as possible. My son is now 5 going on six and he still tics. However, the tics are less frequent and less severe. He will tic when overtired, he will tic when coming off another illness especially one with a fever, he will tic when nervous or over excited and he seems to tic during the summer but we are looking for that trigger. Yes there are things that bring on the tics. I think he has a damaged nervous and digestive systems. These systems are now fragile and have to be watched. Hopefully, the damage can be repaired. So far with a restricted diet, vitamin-mineral-and amino acid supplements, and restricted TV/computer use he is doing 95% better then he was before. We had our son tested for food allegies and there were a ton of them. This might be the first step for your family as well. Before three there was none of this so we feel that the problem was induced. This might be true for you if you look back and figure out a time line. Our next step is to test for mercury or other metals that were and are used in vacination or flu shots. If he turns out to have high levels then we will look into detoxing when school is out. (Sometimes I wonder if TS started with the industrial revolution with it's toxic agents). At times my son can go for months without anything to speak of but I am still worried about my son and when it comes back I still have private bouts of anger and sadness when I am alone. As a father you might as well but it is nothing like where you are now. Once you become pro-active and see your son's positive results you will see that this is not a condition that will hurt his life just a condition that is part of his life. my son has alot of friends, he is doing well in school, he just moved up a belt in Karate, and he is a normal kid with an issue like so many other normal kids who have their own different issues. Your son will overcome this with your families help. This is a family matter. Especially when it comes to food in the house. Like Claire, Heather , Gina and others have mentioned get your son tested for food allegies, have him tested to see if his brain is getting enough vitamins, minerals and amino acids, and PANDAS for any lingering infections. Our son did not show any lingering infections but the diet and supplement dosage intake was all based on lab tests, Great Smokies to name one. Good luck and use the people here as a source of information. I did and still do.

[Glenn]

Thank you to everyone for your comments and feedback. I'm sure it's going to be a difficult road but one that we will make the best of. I'll do more research and look into vitamins and other suppliments as well as try to identify any triggers that may exist. If we see improvement I will be sure to pass on the word.

 

Thanks so much,

 

Glenn

[Ronnas]

Hi Glenn,

 

I just wanted to add my support. Our son started ticcing 3 years ago. There is so much to learn. Through my efforts my son is doing very well. Read through many of the posts here...there is a wealth of information. Take Care.

Ronna

[Guest teresa]

hi my son has ticks and i need help to understand it.

[Guest teresa]

hi my son has ticks and i need help to understand it.

[Guest Teresa]

Is ticks and adhd have some thingthing in comin? my son is 8 and has